October 16, 2015

On Friday Jake ditched work to come and play.  I remembered when we use to do that once a month. This was the first time of ditching work to come and play in months and month I think.  We planned to go to Snowbird's customer appreciation festival.  The entrance fee was just canned goods for the  local pantry.  So we raided to food storage and gave them lost of our gluten filled foods we are not suppose to eat anymore anyways and got free tram passes at Snowbird.

Now the adventure of the day was fun.  It was fun to be all together.  We packed a great picnic lunch. But the tram left much to be desired.  We have ridden the tram other places and hiked around the ski trails and loved it.  But we rode this tram- with 40 strangers then got off at the top to lots of constructions.  We tried to hike, but there was not really anywhere great to hike.  So we ate some of our lunch getting wind whipped on the dirt and rocks and then rode the tram back.  Our magical fall hike was an illusion.  We went down to the bottom to participate in the kids activities and bounce houses... but all there was was one blow up slide :(  ha!  Well that is okay, Gelato makes everything better.  So we got some gelato and ate it.  And lucky us there was a great bird that kept sneaking our crumbs so we did get to see some wild life after all, he was so quick that picture is all we got.

Then I added a picture of Bethany cuddling her "mousey"  It is actually an ugly spooky rat that is part of the Halloween decorations. But since we put it out she finds it carrys it around, sleeps with it, cuddles it, pets it, calls it "my mousey" and loves it to pieces.  And I think this is hilarious.  And I can't wait until she is older and I can tease her about how much she use to love this ugly rat that was suppose to be a spooky Halloween decoration.  But for now I love, that she sees the good in everything and believes that even ugly rats make best friends.
Also ironic because minutes after this picture was taken there was a cartoon bee drawn in a curious george cartoon on the television and she erupted in tears from fright of the bee and hid under a blanket :)

October 15, 2015

The kids had two days off of school last week for a teacher inservice.
I love that.  I love that we get to sneak two extra days of summer after we've been in school for six weeks or so.  And the weather was just that- 85 degrees or something in the afternoons.  The kids and I hung out outside and together and it was grand.  I took them to a little hay maze on Thursday.  We wondered around and ran through it and got lost in it and found our way for about an hour.  Beth was having a hard time keeping up and I thought we might actually loose somebody- well somebody little we did loose Kate but she was old enough to find her way.  So Beth and I went and hung out in the little pumpkin patch for a while as the older kids continued the fun.  Beth and her pumpkin colored hair picking up pumpkins was a great way to spend the morning.  She counted them "nineteen, sixteen, nineteen, fourteen"  and then put all the baby pumpkins next to daddy or mommy pumpkins so they could take care of the babies.  And she had to sit on every pumpkin as well, because pumpkins are for sitting on.  Well at our house anyways because ours are as big as chairs and they are on the front porch.  These ones were not so big, but Beth thinks that is what they are for anyways.

October 19, 2015

Last week on a Tuesday Night we decided to go to Cornbelly's.

But first lets talk about life.
Life lately has been pretty unfair.
I've once again been spending my life in the doctor's office, and the hospital and the lab with a kid.
But what makes it even worse is that it is with the only kid I have that doesn't have chronic health conditions.  Or didn't.   But now does. Now Marianne seems to have joined the ranks with Kate, Sam and Bethany.  Autoimmune issues plus something called Loose Anagen Syndrome, which basically means her hair is going to fall out.  Maybe.   All of it.  Maybe.  She has lost about 80% of it in the last 7 months.
But nobody knows anything really.
Especially doctors.
But we are a unique case.  Of course we are.  We can't even have classic cases of our weird never heard of diseases.  We have to have the weird, "I've never seen this before" cases of the never heard of diseases at our house.

We have some treatments to do, and a new allergy free diet that might help.  But most likely, my beautiful Marianne, will loose her hair, and it might be because she has other underlying health issues yet to be discovered.   And that has been crushing.  soul crushing.  hope crushing.  Not because it is hair, not because she has to be different.
But because I have seen how chronic health issues take away a little piece of the care free happiness my kids use to have.  And Marianne is so great at being care free and happy.  She is kind of all the care free and happy for our whole family.

Also because now I have four children who each have some chronic health condition I get to worry about for the rest of their lives.  When I had three kids with chronic health issues, I still had my Marianne.  She gave me hope, that someday I might have even two healthy kids.  Her health never kept me up until 3am.  But the odds just are not in our favor.
 Almost ever.
So now despite the happy hopeful no big deal attitude I try to have.
I'm up all night now.  Reading the  entire internet again.  And making perfect Paleo meals for a family of six. And worrying.  And feeling let down. And loosing hope that one day we can just be like all the other normal families who don't weigh risk factors every time their kid eats something  Normal families who get over illnesses and don't have compromised immune systems that mean a cold or a flu or heaven forbid strep end up costing us about two months of our lives and about $6000. Normal families who somehow get to move up Maslow's Hierarchy of Needs to things like self actualization instead of being stuck and staying alive- or whatever the very bottom one is labeled
.
Yep it is a pity party for sure over here.  And really what is a party with out cake, and we can't even eat cake so it is the most pathetic pity party ever.

But last Tuesday we went to Cornbellys.  We went to Cornbellys and there was a giant Minion and trampolines to jump on and things to climb and corn kernels to swim and hay rides and puppet shows and princess gardens and swings  and pleasant happy children and we stayed out way to late and I convinced Kate and Sam to come in the spooky dinosaur with me and we felt normal for a whole entire three hours.    The perfect fall weather was just that.  And I think I cried a little on the way home about how perfect three hours were.  We ate dinner at 8:30 at night because our kids were having so much fun and didn't go to bed until almost ten even though it was a school night and I wish every day could just be that day.